Identification and prioritisation

Consumers can help generate new ideas for research, prioritise existing ideas or clarify questions that researchers may have about potential studies

It is considered good practice to involve consumers as early as possible. Consumers working with researchers to prioritise research topics or themes can be a powerful form of involvement as it helps to ensure that researchers’ priorities align with those of patients and service users.

Studies show that there can be mismatches between what has been researched and what consumers would like researched. Besides the outcomes that researchers choose, patients and their carers are often especially concerned with the practicalities of daily life, such as alleviating sleep disturbance, fatigue or anxiety caused by their condition.

This is illustrated in the bar chart below:

TallonD et al. Relation between agendas of the research community and the research consumer.Lancet2000;355:2037–40

Sometimes, consumers may need to be advised that a particular suggestion, although valid, might not be feasible if it is outside the scope of the researcher's expertise or the funder's or regulator's requirements

What involving consumers at this stage could look like:

making contact with existing consumer groups or patient forums to help inform your priorities

holding a one-off focus group to bring together people living with a disease condition to identify the most important research topics

making contact with individual patients in the clinic (through staff) to better understand their unmet needs